Jordyn's Journey to Triumph Over ALL (Acute Lymphoblastic Leukemia)

Monday, December 17, 2012

At home chemo... Ara-C is no fun...

The last little while has been kind of crazy, and I haven't managed to find the time to blog about our journey, but I did get lots of cuddling time with my children, which was nice.

Last Monday we started the second half of delayed intensification. This is supposed to be one of the more difficult and stressful chemo's for the kiddos to go through. So far, that has definitely been the case...

This is us waiting in the RTU for Jordyn's lumbar puncture to make sure there are no cancer cells in her spine and to administer chemo.

Mommy and Jordyn She loves to play with the child life specialists Ipad. They even let her play right up to and including when they give her the general anesthetic. She falls asleep playing, and then gets sad when she wakes up because that is the last thing she remembers.

She just got put under general anesthetic. The nice thing about the RTU as opposed to the operating room is that I get to carry her in and be with her until she falls asleep.

This is in the E.R. Monday night. She had a fever of 103.1

They admitted her because her counts were different than they thought they should be and because they worried about fevers getting too high.

Jeremy and Daddy came to visit while she was inpatient.

They let us go home the next day around 6 pm and just let us know if we saw more symptoms or if we got concerned about her to call.

We got home and Jacob took of her electrode thingies and I stuck them on Jeremy just to see what he would do. He was sooo proud to be wearing them. They fell of and he would stick the right back on. He really looks up to his big sister.

This past week has been a pretty rough one, but there have been a few amazing moments thrown in there. This is Jordyn and Jeremy, and they are actually playing together. Jordyn and Jer even giggled a little. They haven't played like that since before she was diagnosed. It is something that completely warmed my heart and made the rest of the week more bearable.

One of Jordyn's Angel Karen's sent this in the mail, and she LOVES it so much. She tries to wear it all the time, day and night, and gets sad when I make her take it off so it can be washed.

She is getting to the point where sometimes she gets so cold, so she wears hats, sometimes even when she is inside just to stay warm. She loves this one from Angel Karen.

Here she is showing her brother some love. Her brother often dresses up with her, so don't mind the dress... He loves dressing up with his big sister, and she loves to dress him up.

She has started feeling worse and worse over the week, and it got even worse over the weekend. She has nausea almost constantly, and she is having a hard time keeping anything down. She got Ara-C and another chemo at clinic on Monday, and then they gave it to her inpatient on Tuesday, and on Wednesday home health came out to show us how to administer it ourselves. I administered the chemo on Thursday, and found it was more emotionally difficult to give it to her myself than having someone else do it. She kept asking why I was wearing a protective gown, and gloves, and I didn't know exactly what I said, but I had a hard time coming up with something that I felt was okay to say to her.

She is super tired today, but hasn't had as much nausea, but I am not super hopeful that it will stay that way because we have to do iv chemo Monday to Thursday again this week. Oh, and she has also been on a chemo pill since last Monday and will continue to get that every day this week as well.

This is a picture of her port while it is accessed and while Jacob is administering chemo. He got to work later in the day, so he was able to do it. Jordyn gets so sad when it is time to give her chemo... She knows it makes her feel really yucky, and so she cries when we are about to give it and begs to not have to do it. It is really heartbreaking...

This is how she looks most of the time... You can see on her face how miserable she is. She has to carry a bucket around with her wherever she goes because we never know when she will need it. She has barely eaten anything in the last week, and it is hard to get her to drink as well. She knows that when she eats, she usually can't keep it down... She is super dehydrated today, so much so that the clinic ordered some iv fluids. And her legs ache... She cries a lot lately and is pretty sad a lot of the time. I have a feeling this week will be a long one as well...

And I almost forgot... We should know what her blood counts are later on today. Her home health nurse drew a cbc this morning. That will let us know if she needs any blood products, because this phase is pretty rough on their cells... She is completely exhausted today.

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